Understanding ...


Posted by Moderator-JB , Mar 07,2002,18:19   Archive
Us:

Do we understand what is happening to us?

1. Read

http://www.blepharospasm.org/

http://www.dystonia-foundation.org/

Others:

Talk to them IF they show an interest. Often those who are closest to us have the most problem truely understanding. Most of that is because they have a vested interest in having us remain the person that we were prior to BEB/Dystonia. To us, most everything has changed in our world. They see the same person in front of them that may have problems with their eyes one moment, only to appear 'normal' minutes later.

Do we need them to 'understand'? Yes! Do they? Usually not.

Judy

--modified by Moderator-JB at Thu, Mar 07, 2002, 18:21:50




Recommend Current pageAuthor Profile
Replies to this message


Re: Understanding ...

Re : Understanding ... --- Moderator-JB
Posted by kerry horton , Mar 07,2002,18:50 Top of Thread Archive
Hi Judy:
As one of "those" who is close to someone dealing with BEB, my best friend - aka - my Mom, I can understand where you are coming from.
I have watched closely as those close to Mom have tried to deal with BEB and it is true - they are not dealing with the disease on the same time line as the one going through it. The first response is always denial and that can last for a long time. There is no way to tell how long it will last. Maybe it is in direct proportion to one's "need" for the person with BEB to stay "the same". I don't know. It is not easy - for anyone. But I have also noticed something remarkable - and that is the ability of those close to Mom to come to accept this disease and Mom in a new light. It is heartening to witness because it lets me see first hand the love that we have for each other and the ability we have to let each other become or be who we are instead of who we need each other to be. Coming from an Irish "Clan-like" family, that is a rare lesson, and yet it strengthens our very core.
Anyway - I guess what I am trying to say is give those closest to you some time. They may just be in their own grieving cycle. It doesn't mean that how they are feeling or acting now will last forever. Only love does that.
Peace,
Kerry in CT



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Understanding ...

Re : Understanding ... --- Moderator-JB
Posted by Kathy in Atlanta (kathy,Kathy in Atlanta), Mar 08,2002,06:11 Top of Thread Archive
It is only by really trying to put oneself in another's shoes, that they can understand. A lot of people simply are not willing to even do this in their heads.



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile